Sunday we had my local CF walk. Well I use the word “walk” loosely because it was a field day and it was FABULOUS!!! This event is the smaller of the two in my area, there are only about 7 teams so it is very quaint and fun. They did many field day activities for the kids like football toss, run the bases, dodge ball, sack race and more! The kids all had a blast and were good and worn out. The adults got to hang out under our canopies and watch the kids enjoy themselves. We did do a lap around the trail at the park to say we did an actual walk…hahaha. I hope our walks continue in this direction because this was so much more fun than just a walk and a mass of people walking which means craziness. I also had people post pictures to Facebook of themselves in their Shannonigans gear on Sunday so that they could be a part of the day from a far. I will leave you with a few pictures from our day. (more…)
CF Happens
Sometimes in life CF (Cystic Fibrosis) happens…pun intended
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Freedom is being needle free!! Well I know there is much more to freedom than that but right now that is my freedom. I finished 4 weeks, actually 29 days, of IVs yesterday. It is so nice to be free from IVs. Now I know you are asking the million dollar questions, “How do you feel? Do you feel better?” Better is a relative term. I feel “better” in the big picture. The IVs take so much out of me, wear me out and drain me. Having IVs every 6 hours means that you don’t get much sleep or at least you only get to sleep in spurts. It will take me a few days to a week to get back to somewhat normal feeling in the sense of not being so drained, or that is my hope. As far as my lungs and how they feel, they feel better. I am not coughing as much but still having my coughing fits and mornings are the worst. Mornings are the worst and will always be the worst because when I lay down to sleep all of the junk in my lungs settles on the lung wall. When I toss and turn or sit up it all starts to move and irritates my lungs, triggering coughing fits. With that said, if you ever call me in the morning and I am still in bed I may not answer it because I will start coughing and it will not be a productive conversation and coughing in someones ear and not being able to talk is not one of my favorite things to do. (more…)
CF Happens 